The state of cancer-focused community outreach and engagement (COE): reflections of Black COE directors

Abstract

The requirement of community outreach and engagement (COE) as a major component of the National Cancer Institute (NCI) Cancer Center Support Grant has had an enormous impact on the way NCI-designated cancer centers identify, investigate, and address the needs of their catchment area (CA) communities. Given the wide-ranging diversity of our nation, COE’s scope of work (SOW) is extremely demanding and complex. Yet, COE is often marginalized and viewed as void of scientific methods when, in fact, it requires specialized scientific knowledge and a broad range of proficiencies. Black COE scientific directors may be particularly attuned to this marginalization as they have often confronted workplace inequities that resemble the health inequities observed within their cancer center’s CA. Thus, Black COE leaders are uniquely positioned to offer insight on the past, present, and future of COE. Key areas discussed include the low involvement of minoritized group members and those with appropriate expertise in national COE leadership; the lack of established, consistent criteria for evaluation of COE components and qualifications of evaluators; the need for substantial financial investment in COE; potential misalignment of community priorities and cancer center objectives; professional development and growth of COE staff and leaders; the expanding scope of COE across their respective cancer centers and CAs; and the need for center-wide involvement in COE and an “all-hands-on-deck” approach. These areas warrant thoughtful dialogue as COE evolves, for the benefit and success of all COE leaders. However, this dialogue must include diverse voices representing similarly diverse stakeholders at every level.

The requirement of community outreach and engagement (COE) as a key component of the National Cancer Institute (NCI) Cancer Center Support Grant (CCSG) began with the 2016 Funding Opportunity Announcement (PAR 17-095) (1) and has had a profound impact on the way NCI-designated cancer centers identify, investigate, interact with, and meet the needs of their catchment area (CA) communities. At most cancer centers, this mandate led to the creation of a new associate director (AD) or deputy director (DD) role with responsibility for planning, implementing, and monitoring COE activities and metrics. Such a role is warranted because COE’s SOW is extensive and expectations are multitudinous. COE work is intellectually demanding, requiring AD/DD leadership to 1) define a CA geographically; 2) guide and facilitate community-engaged, CA-relevant research across disease groups and programs; 3) understand and communicate cancer epidemiology, risk, prevention, and outcomes across the CA’s leading cancers; 4) develop expertise in multisectoral cancer burden and disparities; and 5) facilitate multidirectional communication with all CA communities. CAs can be vast and, in several cases, noncontiguous, with a CA spanning non-neighboring states. Furthermore, communities within CAs reflect the tremendous diversity of our nation and have similarly diverse needs. Hence, COE’s SOW is also both socially and emotionally demanding, often necessitating “high-touch” approaches, including direct, sustained engagement with diverse stakeholders, allied organizations, cancer center members and staff, and a wider university system or enterprise.

Although the current COE landscape has evolving complexity and rising demand (2), COE has traditionally been marginalized and regarded as void of scientific methodologies. This marginalization may be salient for Black COE leaders as it bears similarity to marginalization resulting from workplace inequities that resemble the health inequities observed within their cancer center’s CA. Yet, bringing academic and community voices together in places that have a mixed history of service and were not created for or by historically marginalized individuals requires substantial scientific prowess. This expertise is necessary to move a cancer center’s impact beyond traditional publications and grants to true paradigm change. Furthermore, many COE leaders who self-identify as Black are simultaneously experiencing the pressure of an institutional “Black tax” in the form of extra, uncompensated work (3) and the hidden work of COE. As Black COE leaders who endeavor to create an enduring and meaningful presence in our respective CAs, we formed the Alliance of Black COE Scientific Directors to create a space to discuss challenges and opportunities to advance the science and practice of COE as members of one or more minoritized or marginalized groups. We are uniquely positioned to provide perspectives on approaches that will successfully move the needle on population-level cancer survival, survivorship outcomes, and disparities. Herein, we describe considerations for COE metrics, leadership, scope, and substance.

Metrics

The COE requirement necessitates criteria for evaluation, an area that remains murky in the continued absence of shared COE language, methods, and defined outcomes. COE continues to evolve, informed by real-time revisions of the CCSG guidelines and the persistent challenge of actually executing COE plans. Collectively, we have an opportunity to establish best practices for the conduct and evaluation of COE as a pivotal score-driving component of the CCSG. As a result, COE has become a special topic at national meetings, such as the pre-conference Associate Director/Program Leader (AD/PL) meeting of the American Society of Preventive Oncology and the annual Cancer Center Community Impact Forum for NCI-Designated Cancer Center COE professionals, to share best practices. However, programs and conversations within such meetings have rarely been led by or included COE professionals who identify as members of minoritized groups, lending to the lack of metrics of exceptional impact across minoritized and marginalized populations in the United States. The urgent need for standardization of COE strategies, approaches, and evaluation is the primary reason that the Alliance of Black COE Scientific Directors launched the inaugural NCI-funded Science of Community Outreach and Engagement Conference (R13CA290996) in May 2024, which prioritized the inclusion of diverse COE professionals, government officials, and community members. Moving forward, it is crucial that the overarching goals and expectations for COE are shaped by researchers, practitioners, and community stakeholders who have relevant training and long-standing expertise in community engagement and participatory research. It cannot be overemphasized that COE efforts must include input from the communities that cancer centers serve.

National leadership and the COE agenda

The NCI’s emphasis on COE has led to exponential growth in activities across cancer centers that promote cancer prevention and control; engage community stakeholders in the basic, clinical, translational, and population-based research conducted across the center; and support the practice of cancer prevention and control. This emphasis has catalyzed innovations in both the art and science of COE. Indeed, the goals of COE present an extraordinary opportunity to galvanize individuals from historically marginalized groups and create channels for sharing new and diverse perspectives in cancer centers, an opportunity that is aligned with the recruitment and retention of next-generation scientists. A notable by-product of COE has been increased diversity of senior cancer center leadership with nearly three-fourths of COE leaders identifying as female and 56% self-identifying as a non-White race or Latino/Hispanic ethnicity (4). Yet, within the NCI, there appears to be little engagement of established COE scientists and community leaders who are Black, Indigenous, or represent other people of color (BIPoC) who can provide leadership and oversight in establishing criteria and metrics for meaningful outreach and engagement. Diversifying the COE experts who set the national agenda can help ensure the development, implementation, dissemination, and adoption of evidence and best practices to address cancer burden and disparities.

COE leadership within cancer centers

The 2019 revision of CCSG guidelines (PAR-20-043) included a new merit descriptor for COE: “How appropriate and effective is the leader (or leaders) in relation to expertise and time commitment?” (5). There are no existing competencies by which to evaluate appropriate qualifications for an AD/DD for COE, and the national discussion of such competencies has been limited. In some interpretations, investigators who conduct research in cancer prevention and control with disparities consideration may be deemed appropriate. We propose here that this alone is inadequate to fully characterize qualifications to lead COE. Areas for consideration can be framed by fundamental questions, such as the following: What is the individual’s training, experience, and history with community engagement and partnerships? To what extent is the individual familiar with the historical, societal/social, political, and cultural dynamics of the diverse populations within their CA? How has their work incorporated community-engaged research principles? To what extent does that individual demonstrate commitment to COE beyond funded research? How has the individual’s research and other activities impacted the communities they currently serve? In the absence of responses to these questions, cancer centers may appoint COE leaders who “lack the knowledge, training, and skills required to effectively [conduct community-engaged research]” (6). Without established expertise and leadership, a cancer center’s COE initiatives may be susceptible to what Lett et al. (7) call health equity tourism, with a center “parachuting” into the field and applying a “reactionary rather than prospective” approach to research in communities that is based on NCI-driven interests and resources rather than a commitment to health justice.

Furthermore, it is essential that we and all those serving as COE directors engage in critical and ongoing self-reflection to gain awareness of and maintain vigilance over one’s own blind spots and biases. Community-based participatory research (CBPR) principles emphasize the importance of openly addressing issues of race, ethnicity, and social class and embodying cultural humility (8). This approach is especially relevant given the known influence of structural racism on cancer outcomes (9). Similarly, public health critical race theory emphasizes “race consciousness” and calling explicit attention to racial dynamics in the social world and in one’s personal world, as well as deep awareness of one’s racial position and racial stratification (10). Such introspection and humility should guide the development of competencies that will foster COE teams’ ability to tackle the evolving concerns of diverse populations. Overall, defining and refining expectations of those who lead COE will help cancer centers develop strong and thriving community relationships, resulting in a COE component with depth, sustainability, and the capacity to develop paradigm-shifting approaches to cancer health equity as well as drive changes in healthcare policy and practice.

NCI evaluation of COE: reviewer qualifications

An area closely tied to COE leadership is the evaluation of COE by reviewers of the NCI CCSG application. A longstanding concern nationally is the evaluation of COE by reviewers without the aforementioned expertise in COE and/or community-engaged research. Although there would be general consensus that an immunotherapy or molecular oncology program should not be reviewed by a behavioral or cancer control researcher, there is much less consideration of the appropriateness of having a non-COE expert (eg, a researcher with little or no experience using a community engaged research approach with CA communities to inform or guide their research agenda) review the COE component. Given the positive correlation between the COE score with a cancer center’s overall score (11), the paucity of reviewers with COE expertise participating in CCSG reviews is alarming and inconsistent with the evaluation of all other cancer center programs and components, arguably with the exception of the Plan to Enhance Diversity (PED). To demonstrate purposeful commitment to strengthening the science of COE, the NCI and cancer centers should carefully consider the training and expertise of the COE component reviewer. Like COE leadership, being a cancer prevention and control scholar with a focus on disparities (or simply a person of color) should not suffice as qualification for COE component reviewer. Careful attention must be paid in the reviewer selection process to ensure that the reviewer’s training, disciplinary background, scholarship, research funding, and experience with community engagement has prepared them to offer rigorous, meritorious evaluation of the COE component. Similar to professional development opportunities provided to scientific reviewers of other National Institutes of Health mechanisms, resources that promote thoughtful and consistent evaluation of this CCSG score-driving area are much needed. Such resources should include robust reviewer guidelines developed through collaboration between NCI, recognized COE scientists, and BIPoC community leaders.

Funding and investment to ensure the success of COE

NCI evaluation must also focus on and find ways to incentivize institutional funding of COE. The investment a center makes in its COE budget directly reflects its commitment to COE, and COE is more likely to thrive when this commitment is strong and grows over time. Most COE leaders are responsible for CAs that serve millions of residents across many demographics, and the responsibilities and expectations of COE are considerable. Meeting those expectations requires ample resources to cover personnel, space, technology, materials, and activities to deepen relationships with community partners and facilitate the development of community-engaged research projects across the centers’ programs. However, a recent survey found that 45% of centers represented reported COE budgets of $199 999 or less (4). This range is woefully insufficient to support staff and programmatic activities across a CA and must be supplemented by additional funding from a cancer center’s operating budget, affiliated institutions, and fundraising efforts. Evaluation of a COE initiative and the cancer center overall must take into account the center’s funding commitment to COE, including appropriate percent effort and compensation of COE leaders and staff along with provision of the aforementioned resources. An underdeveloped area of CCSG evaluation is a rubric for determining a center’s COE minimum budget. One such rubric might consider calculation of the COE budget as a proportion of the overall CCSG budget.

Institutional climate and COE

A neglected facet of support is institutional or campus climate, which has a direct impact on a COE leader’s success, a particular concern for COE leaders who are members of historically minoritized groups. Recent revisions to the CCSG mandating a PED provide new opportunities to interrogate the environment in which COE leaders conduct their work. PEDs are significant when one considers the current political context and the expansion of policies and legislative agendas across the nation that promote the continued marginalization of minoritized groups and the dismantling of initiatives that center diversity, equity, and inclusion. In previous commentary, we have asserted that cancer centers must develop strategies to address current, pending, and planned legislation consistent with noninclusive policies and the potential impact on COE initiatives (12). PEDs can bolster such strategies by prioritizing the collection and review of demographic data that describe cancer center members, staff, and leadership. PEDs might also include climate surveys that assess the extent to which the institution is perceived as inclusive and safe versus hostile for members of any given minoritized group. An environment of unacknowledged or unchecked racial, gender, and other bias is unlikely to be one in which people of color, women, and sexual/gender minoritized leaders will succeed, even if given adequate resources. With the recent news of Black women in higher education who either have died by suicide or have been compelled to step down from leadership because of internal and external forces (13), it is urgent that PED propose climate surveys that can contextualize the environment in which the COE leader works and inform an understanding of COE’s progress or lack thereof.

Revisiting the (mis)alignment between COE and clinical trial accrual

An area in which there has been little discourse is the core motivation propelling COE across cancer centers. It has been well communicated that the broad goal of COE is the reduction of cancer burden in the US population as emphasized in CCSG guidelines. For those COE initiatives that emphasize deep engagement with community, relationships may be complicated by other cancer center priorities, such as the imperative to increase enrollment of diverse populations in cancer clinical trials. The need to diversify enrollment is unarguable, and the expertise to effectively communicate the purpose and benefits of clinical trials to lay communities often lies within COE. The 2021 CCSG guidelines (PAR-21-321) state that a center’s application must “describe the role the COE component has in facilitating accrual to clinical trials from the center’s catchment area” (14). The guidelines also include an important caveat for reviewers: “A center’s deficiencies in accrual to clinical trials from its catchment area should be addressed in the Clinical Protocol and Data Management and the Research Program components, not COE” (14). This guidance sets a boundary between the responsibilities that COE has for clinical trial enrollment versus the Clinical Protocol and Data Management and research programs. However, within cancer centers and among CCSG reviewers, these boundaries can be blurred given the expectation that COE develop, evaluate, and implement strategies to increase clinical trial awareness, knowledge, interest, and participation. Nonetheless, maintaining these boundaries in the review of COE is essential. When the boundary is blurred, the relationships that COE builds with communities, especially those that have differing perceptions of clinical trials because of historical offenses, can be damaged. To the extent that clinical trial enrollment is the ultimate goal of community engagement, rather than long-term and mutually advantageous relationship, cancer centers may be viewed by community partners as extractive, transactional, or self-serving.

Managing the scope of COE

As mentioned earlier, the scope of COE is broad, and expectations are numerous. COE initiatives are rewarded for being ambitious, as reflected in the multiple merit descriptors that reviewers are asked to use in their evaluations of COE impact, including defining the cancer center’s CA; the quality of infrastructure for stakeholder participation in cancer research across basic, clinical, translational, and population sciences; communication of community needs to center leadership and members in ways that catalyze research; facilitation of accrual to clinical trials; application of strategies to reduce cancer burden in the CA; COE’s influence on health policy; and the extent of cancer center reach within and beyond the CA, including globally. These descriptors determine the scope of COE, but feasibility needs to be more closely examined. Meeting these criteria, in addition to maintaining an outstanding research program, can be daunting for COE leaders, even those with generous institutional backing. COE directors are stretched thin because of hiring, training, and supervision of staff; oversight of cancer control interventions at different levels of policy, community, institutional, and individual influence; ongoing consultation and cooperation with cancer center leaders and members across different disciplines; and interaction with a broad cross-section of community stakeholders. Expectations of COE are high but little attention is paid to the demand on COE leaders, many of whom lead far-reaching COE initiatives while attempting to protect the time needed to maintain their independent research programs. In addition, many COE leaders are also part of the minoritized and marginalized populations they serve, which may be a source of additional stress beyond their job description.

Pathways for training and growth in a COE career

The growth of COE has also outpaced the availability of COE professionals. Although COE certainly benefits from the inclusion of those with familiar roles such as clinic- and community-based navigators, certified health education specialists, health communication specialists, and research assistants with skills in data acquisition/collection, management, and analysis, we suggest that the most effective COE professionals have competencies in more than one of these areas. The collective COE mission might be advanced through cross-center dialogues to clarify these competencies and create curricula to teach and expand pertinent skills. The relatively new Certificate in Community Outreach and Engagement (COE) Training Program, coordinated by Cedars-Sinai Cancer Center, represents an attempt to standardize COE education and acknowledges the need to build and maintain a highly proficient COE workforce. We are not suggesting that formal COE-related certification is necessary but highlight this program to underscore the value of continuing education and learning that can advance the science of COE and transform dated approaches to CBPR and community-engaged research for impact.

A related issue is the cultivation of the next generation of COE scientific directors. We have observed that some early-stage investigators are hesitant to pursue a COE leadership position because of the formidable demands of the role, whereas others are tapped prematurely to assume COE leadership. The role of COE scientific director requires solid skills in leadership, administration, strategic planning, team management, communication, and community engagement, as well as scientific knowledge across the research continuum. These demands create concerns about the ability to sustain an independent research program, concerns that are wholly realistic and warranted, especially in settings with limited mentorship for these potential future leaders. The relevance of the saying “We lift as we climb” is not lost on those of us who are creating spaces for early-stage investigators to master the science of COE in high-pressure environments that reflect the COE component’s rapid evolution and expansion without compromising their own careers. To sustain the impact of COE on a CA’s cancer burden, we must be advocates for the next generation as they ascend the academic ladder, prepare to lead the COE component, and make significant contributions as COE scientists.

Finally, consideration of pathways to other leadership positions within a cancer center is important for COE leaders as a matter of professional growth. For example, some cancer centers have encouraged the transition of COE directors to other AD roles (eg, population sciences) or promoted senior COE leaders to a DD role. Such moves not only have helped with retention of talented faculty but have opened the door for new leaders to emerge and assume key cancer center posts.

COE requires authentic engagement across the entire cancer center

Although COE leaders and staff drive many COE initiatives, it remains vital that cancer centers prioritize and emphasize COE as an “all-hands-on-deck,” center-wide, long-term commitment and investment in CA communities to promote cancer control and reduce cancer incidence, morbidity, and mortality. It is not uncommon for many cancer center investigators to view COE team members as their proxies and presume that the connections, social capital, and trust that COE leaders and staff build within CA communities will automatically transfer to them and the center as a whole. This is not always the case because connection and trust are often person- and context-specific. This presumption reflects the unrealistic and unsustainable expectation that the COE team can and should fully represent all sectors of the cancer center. In fact, it is incumbent upon each investigator to ensure that their research is responsive to CA trends, needs, and disparities; to communicate their science to CA communities and demonstrate the public relevance of their research; to invest time and energy in relationship building; and to increase their own capacity to engage and integrate community members in their work. Examples of cancer center leader and member investments that signal authentic commitment for research engagement and extend beyond COE include the following:

• Providing fair compensation for consultation and context expertise, as well as subcontracts to community-based organizations to ensure equitable partnership in research, through personnel, technology, and the addition of other assets.

• Developing and disseminating strategies to increase community participation in cancer research as collaborators and leaders, such as training programs that build community research skills.

• Including a trained community scientist or citizen scientist as a member of all research programs and projects to facilitate inclusive and community-responsive research.

• Sharing cancer center resources and championing community-based services to remove barriers to cancer care and research participation that are rooted in social determinants (eg, unstable housing, low access to reliable transportation).

Summary

The observations presented in this article represent possible directions in shaping future iterations of COE requirements within the NCI CCSG guidelines and COE implementation across cancer centers. Guided by our recognition of the science underlying effective COE, we have outlined a number of areas in need of further dialogue and action for greater impact. Expertise in COE science must be prominent in the qualifications of COE leaders within cancer centers and COE reviewers assigned by the NCI. Elements of COE review that deserve greater attention include the nature and depth of relationships between community stakeholders and cancer center members, the level of funding for COE initiatives, and the extent to which the cancer center’s climate is inclusive and respectful of members of minoritized groups. An area at risk of being overemphasized as part of review is the COE’s role in clinical trial enrollment. The expectation that COE be the primary driver of clinical trial accrual, rather than serve in a consultative role to a cancer center’s CDPM component and research programs, potentially positions COE’s relationships with community stakeholders as transactional and extractive versus transformational and mutually beneficial over the long term. The ever-expanding scope of COE and the difficulties that COE leaders and staff face in managing that scope warrant more discussion, as does the need to cultivate the next generation of COE leaders, particularly those from underrepresented backgrounds. Even with skilled COE leaders and professionals, effective COE cannot be achieved by the COE team alone. Authentic engagement across all sectors of the cancer center and an “all in” ethos are required. Ultimately, the future of COE must be shaped with greater input of diverse voices, especially from those populations that cancer centers are tasked to serve, to ensure the sustainability and longevity of the COE mission.

Data availability

No new data were generated or analyzed as part of this work.

Author contributions

Hayley S. Thompson, PhD (Conceptualization; Writing—original draft; Writing—review & editing), Kimlin Tam Ashing, PhD (Conceptualization; Writing—original draft; Writing—review & editing), Nadine J. Barrett, PhD (Conceptualization; Writing—review & editing), Monica L. Baskin, PhD (Conceptualization; Writing—original draft; Writing—review & editing), Lisa Carter-Bawa, PhD, MPH, APRN, ANP-C, FAAN (Writing—original draft; Writing—review & editing), Timiya Nolan, PhD (Writing—original draft; Writing—review & editing), Folakemi T. Odedina, PhD (Conceptualization; Writing—original draft; Writing—review & editing), Kim F. Rhoads, MD, MS, MPH (Conceptualization; Writing—original draft; Writing—review & editing), Vanessa B. Sheppard, PhD (Conceptualization; Writing—original draft; Writing—review & editing), Charnita Zeigler-Johnson, PhD, MPH (Conceptualization; Writing—original draft; Writing—review & editing).

Funding

No funding was awarded to support this work.

Conflict of interest

The authors have no financial interests to disclose.